Sex and Responsibility

iStockphoto

So, I was talking with one of Reilly's doctors about his serious romantic relationship, and potential hazards of sexual activity among young adults with disabilities. What, I asked, can we do to keep him safe? Is vasectomy an option?

Nope, said the doc. “Well, what CAN we do,” I implored. “Tell him to go to www.bedsider.org[3],” he said. I immediately put it into my Google machine, and was a little surprised, and then awed, that this retirement-age physician even knew about such a site, much less recommended it to his young adult patients. It's a no-nonsense, down-to-earth, judgment-free website that gives teens and young adults the medical and practical information they need to stay safe while enjoying an active, normal sex life. No preaching, just teaching. No guilt, no shame. It's not a website geared especially for a disabled population, but it's easy to use and helpful with not only sex and contraception questions, but some thorny relationship issues, too. (According to the website, “Bedsider.org (Bedsider) is an online birth control support network for women 18-29 operated by The National Campaign to Prevent Teen and Unplanned Pregnancy[4], a private non-profit organization.” Although its primary audience is women, it provides information for men as well.)

I'm guessing there are a lot of parents, of neurotypical teens as well as those on the spectrum, who would be shocked and horrified that such a thing exists. One parent I talked to recently was in complete denial about her daughter's sexual activity, until it hit her in the face. She felt she had sheltered her daughter her whole life, only to have her go away to school and discover sex. She wondered if she should withdraw her daughter from school, keep her at home where she could be safe. She thought about putting her daughter on the Pill, but didn't want to “encourage” the sexual activity. I understand that sentiment, and her fear and worry. But keeping our children from experiencing the world isn't preparing them for independence. All we can do is to give them the tools they need to keep themselves safe. Then hope and pray it works. Just like with our neurotypical kids. With a lot of kids on the high-functioning end of the spectrum, we parents really have not much more control over their actions than we do our typical college-age children. Yes, our ASD kids are more vulnerable in many ways. But they have the same desires and urges that everyone else has, and, I would argue, the right to pursue as independent a life as possible.

In Virginia, where we live, a young woman with Down Syndrome recently challenged her parents' request for guardianship and prevailed. Her parents had asked the court for the right to make medical decisions for her, as well as to decide where she would live and who she could socialize with. The judge ruled that 29-year-old Jenny Hatch[5], who has an IQ of 50, needs some guidance with those decisions in the short term, and awarded temporary one-year guardianship to a couple who were Jenny's choice. Their guardianship apparently would be less restrictive than her parents'.

It's a reminder that, though we have a young adult child with disabilities, he's more normal than not. And we can't keep him in a bubble for the rest of his life. It's scary, but important, to encourage his independence. Somewhat surprisingly, Reilly seems to get that we don't want to control him, we only want him to be safe.

As with so many life problems, there are no easy answers. A Google search turns up lots of questions about things like vasectomy for young men with ASD, but few actual answers. Everyone feels your pain, but they're not sure there's a lot you can do to protect sons without violating their rights. The best bet seems to be very concrete, nonjudgmental sex ed. Parents, educators and therapists all need to accept and respect the innate sexuality of young people on the spectrum. Though they may seem childlike, they aren't children. It seems to be possible for many on the spectrum to enjoy fulfilling sex lives, and some are even raising families.

I don't know if any of my research into the subject has eased my anxiety. It has broadened my view somewhat, and made me start to look at Reilly not as a child with disabilities, but as a young man starting to find his place in an adult world. He's making some mistakes, and, I think, learning from them.